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Starting EEN Tomorrow

Hello everyone! I'm 33 and was diagnosed with Crohn's about two months ago. My GI finally found a nutritionist who was willing to consult with us and I'm beginning EEN tomorrow using Orgain and supplementing with sublingual B12, fish oil, Vit D3 drops and iron capsules. I'm also permitted camomile tea and the occasional fresh-squeezed orange juice, piggy-backing off of research on the Crohn's Disease Elimination Diet.

I decided not to start right away with the CDED because I have four kids and I homeschool and the trouble of learning that diet is greater than just cracking open a bottle of Orgain while I finish our homeschool year. I also have spent the last couple of months learning as much as I can about the SCD (because I hadn't heard of the CDED until the nutritionist told me about it a couple days ago), and intend to begin the SCD after my 6-week course of EEN. It just seems like too much work to learn new parameters for a different diet. I'm also not sure if it would mesh well with my oldest child's special diet (he also has a GI auto-immune disease....a different one, of course :sneaky: ). I'd love to hear from anyone who has done EEN and then transitioned to the SCD and what their experience with that was.

I'd also love to hear about how people manage their stress and what sorts of things they do to down-regulate. My family already eats pretty healthily, so I'm thinking that a big component for me could be my very sensitive stress response. Has anyone read "Why Zebras Don't Get Ulcers?"
 

my little penguin

Moderator
Staff member
As a parent SCD is far harder than cced
Scd has a lot of home made (create your own yogurt etc..,)
Cced has a simple list of allowed foods and amounts
Chicken eggs potatoes much more sustainable long term
But as a mom it’s all tough when your dealing with other kiddos issues as well
Remember oxygen mask first

my kid was dx at 7 now 17 almost 18
So he has done een multiple times
It works well
Cced did not. Do much
It was added in addition to meds
In his case
Meds work
Diet is a nice thing to add to boost things
Yea he has tried them all over the years
So
Good luck
Een is easy but hard at the same time
The body has a need to chew (chew crushed ice)
 
Thanks for the tip about the ice.

Because of my oldest son's Dx (eosinophilic esophagitis) I already do a lot of from-scratch cooking. SCD would require more from-scratch than I already do (which is quite a lot!) but I've picked up tricks over the years, and I have a babysitter come help me once a week, so hopefully it will work out. My nutritionist suggested trying the Mediterranean diet long-term after I've been in remission for a while (3 mos to a yearish, I guess?) because she says that seems to have promise.

I guess what could be tricky for me is that I'm used to looking at labels for allergens for my son, but the SCD is a lot more about food additives that may or may not be on the label. If anyone has any info about unlabeled additives, that's next on my list to learn about.
 

my little penguin

Moderator
Staff member
So they thought Ds had EoE prior to his scopes at age 7 - he has life threatening food allergies to nuts /fish .
EoE is thought by some to be a precursor to crohns

is your plan with your Gi to do een while waiting for mainten Meds to kick in ?
Or just do een with scd/or cced ?
Most need meds in addition to diet
Mediterranean diet is helpful in crohns (recommended by chop ) but not instead of meds
In addition to meds
If you plan on keeping things (inflammation etc..) under control with scd or cced then if your lucky for that to work
Those diets are for life ..
Along with regular scopes /blood work /imaging

additives are not listed on labels
Scd has groups on line for brands etc on additives
Cced is unprocessed food so no additives to watch out for
You make it all ...
 
So they thought Ds had EoE prior to his scopes at age 7 - he has life threatening food allergies to nuts /fish .
EoE is thought by some to be a precursor to crohns
You know...I kept thinking it was too bizarrely coincidental that my son and I both have unusual GI diseases. I was wondering if there was a connection, but we have been doing this EOE thing for 7 years (my son is 9 now) and nobody mentioned it, even when I said my mother and one of my brothers both have Crohn's disease. I had to do a quick search when you said that, and the research is out there. I really feel frustrated when I find that medical professionals haven't shared something. I guess they don't want to worry people, or have people looking for things that aren't there, but still...it would be nice to know this stuff, esp since it's crossed my mind more than once.
 
is your plan with your Gi to do een while waiting for mainten Meds to kick in ?
Or just do een with scd/or cced ?
Most need meds in addition to diet
Mediterranean diet is helpful in crohns (recommended by chop ) but not instead of meds
In addition to meds
If you plan on keeping things (inflammation etc..) under control with scd or cced then if your lucky for that to work
Those diets are for life ..
Along with regular scopes /blood work /imaging
My plan with my GI and nutritionist is to do EEN and then switch to the SCD, no meds. They both seem to think that it's possible to enter remission w/o meds. I did say that I'm willing do do meds if I have to, but I'd like to push that off as long as I can.

I realize that these dietary changes are life-long. I've lived my whole life without having a restaurant-centered lifestyle because we didn't have the money for it when I was growing up; and having a child with 15 food allergies really sealed the deal on no fast food. We are pretty used to taking food with us everywhere we go and, I don't anticipate making shocking changes to our diet, based on the books I've read (Breaking the Vicious Cycle and NIMBAL Therapy). I'm also in a milieu with other homeschooling families who are serious about eating organic, whole foods and cooking at home as a life-style, so I feel supported by my friends in that way. Maybe it won't be a workable diet long-term, but I think I owe it to myself and my children to try, especially since I'm waking up to the fact that all four of my kids are at risk for developing this disease.

I really appreciate your support and perspective and having the ballast of a reality check that this may not be a long-term solution.
 
I am starting elemental 028 tomorrow morning also.

All my water is in the fridge boiled ready so it has no bacteria.

And it is possible to go without meds, I last did enn ten years ago and have had no meds since.

You will not do it however without some form of enn, I would think 25% enn to food as a minimum daily as a meds replacment the more the better however.

I have not heard of the brand Orgain is this specific crohns enn medication ?

In the uk we have two main brands
Elemental 028
And nestle modulin

First 3 days is hardest so hang tight if your going full enn.
 
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I'd also avoid a diet after if I were you.

Listen to your mind and stomach not a cook book, eat safe foods that don't cause pain.

25% enn and avoid foods that make you flair I have just had a really good ten years from that.

50% een and safe foods that don't trigger crohns that would also lead to very long remission.

Everyone is different with foods, I can eat spicy curry but fruit kills me.
 
Thanks for sharing your experience, @westernbuddy. Orgain is a premixed meal-replacement beverage sold here in the U.S. It's not specific to Crohn's, but the nutritionist I spoke to who specializes in GI disorders was familiar with it and supported my choice. Though I would consider Modulen if it seemed like this wasn't the best choice for me. It's not much more expensive than Orgain.

Have you done regular scopes or MRIs in the last ten years?
 

my little penguin

Moderator
Staff member
A high proportion of patients with eosinophilic gastrointestinal infiltration were subsequently diagnosed with inflammatory bowel disease. Patients persistently symptomatic or who do not respond to treatment should be reassessed to exclude inflammatory bowel disease, given its high prevalence in this group of patients.
From

I should have stated eosinophilic disorders not just EoE

Scd or cced does work long term in some adults
I just wanted to be sure you understood that it was life long
Some folks don’t
I hope the diet works for you
Parents of kids with food allergies has a great eosinophilic section /recipe database

as far as Ds since was dx with juvenile arthritis at 10 -diet alone wasn’t going to be enough so in his case meds were a necessity
 
Thanks for the clarification about eosinophilic disorders @my little penguin. I did look up the overlap with EOE specifically, and there is a little bit. So far, I don't think there's evidence that my son has Crohn's, but it's good to know that my gut (lol) instinct is correct that he is at risk for it. I suspect my second son (7) may have Crohn's and I'm going to get him in to see a GI soon. My brother was Dx around 10 yrs old.
 
Yes I had regular scopes, all was good.. until now.

I'm trying to repat the process of full elemental diet again to induce remission and repair the damage, that must have occurred last 12 months.

So I have gone around 9 years no meds and great health, maintained with partial enn
 
Yes I had regular scopes, all was good.. until now.

I'm trying to repat the process of full elemental diet again to induce remission and repair the damage, that must have occurred last 12 months.

So I have gone around 9 years no meds and great health, maintained with partial enn
I'm sorry you aren't doing well at the moment, but that's really amazing that you went so long doing so well. It's really encouraging to me, and I'd be glad to get that far.
 

crohnsinct

Well-known member
Hi there! Glad I saw the tag, I don't always get them.

My daughter's have both tried diet to control their Crohn's. We did IBD-Aid, CDED and more recently SCD. IBD-Aid and CDED didn't work BUT I can't say we had the best support from the medical professionals. Pretty much just had some guidelines thrown at us and told to figure it out. Also, my older daughter has very severe Crohn's that even double biologics on off label dosing can't control so I truly feel you can't judge a diet based on her.

That said, we most recently did SCD for a year. It is a lot of work but mostly just figuring out is this or that safe but as long as you make all your own stuff you are fine and it sounds like you are already living that lifestyle. I think you are going to do great! The most annoying thing for us about the diet was the no grains thing. Being Italian, we used to think celiac would be a death sentence for us and then they said SCD and no grains and we were thrown for a real loop. You have read the book so you are well prepared for what that means.

I will say, if you approach it with a sense of excitement and wonder, it can be fun discovering new recipes. We recently stopped the diet but my kids still ask for their favorite SCD recipes and I just had a craving for my favorite muffins.

SCD has been around for a number of years so there are so many resources online for recipes and such. Just be careful because some sites will list SCD recipes and then go ahead and list an "illegal" ingredient. Also, sourcing safe spices, supplements etc gets difficult because companies don't have to always include things like anti caking agents. Ofcourse, after awhile you may be able to tolerate those but for the first 6 months you want to be really, really strict.

Diet can work. There are plenty of studies that say it can. However, it is just another treatment option and just like the pharmaceutical options it will work for some and not work for others. Also, just like the pharmaceutical options it will not work for more people than it will work for. I think the high fail rate gives diet a bad reputation but it can work.

SCD to me is counter intuitive because it relies heavily on animal products for calories and there is plenty of science to support that animal products are pro inflammatory. It is super difficult for a vegan to gain and maintain weight on the diet because of the no grain issue so they take out two major food groups. But there is plenty of antidotal evidence that it works. Just not a lot of scientific evidence proven with scopes that it results in endoscopic healing.

CDED does a better job at proving endoscopic healing and is a somewhat easier diet to maintain, especially if you want to lean more toward the vegan lifestyle.

I think really what all these diet approaches are proving is that processed foods are bad and the more you can cook from scratch and avoid the pro inflammatory agents the better. So pick what works best for you and your family.

I am available if you need a recipe, resource, a pat on the back etc.
 

Lady Organic

Moderator
Staff member
This book from a UK GI is very interesting. He works with EEN and diet in his practice with great results.
I know GI practice in the UK and Israel for instance are really proactive with EEN and diet in controlling and helping Crohn's. This is not the case in North America, unfortunately.
 
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I think really what all these diet approaches are proving is that processed foods are bad and the more you can cook from scratch and avoid the pro inflammatory agents the better. So pick what works best for you and your family.
Agreed. My husband was born behind the Iron Curtain and traditions of cooking real food as a community and sharing that food as a community still exist (though they are beginning to be threatened by food product interests). I love feeding my family real foods, but gosh, it wouldn't feel like swimming up stream so much if we hadn't abandoned real food a couple of generations ago.

Thank you so much for sharing your experience with me, I sincerely appreciate your encouragement and insight.
 
This book from a UK GI is very interesting. He works with EEN and diet in his practice with great results.
I know GI practice in the UK and Israel for instance are really proactive with EEN and diet in controlling and helping Crohn's. This is not the case in North America, unfortunately.
I will check it out, thanks!
 
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